Out of the Box

At some point and time you have to break with "the way things are always done" and you have to try. At least try to get yourself out of the box.

Its time.

I shared with the transplant coordinator that it is time to think out of the box. I know they want to keep her here to tweak this and tweak that or keep her in a hospital somewhere to do the same. BUT...the truth is this: Ashley Kate's lab work will never be perfect. Normal is not where we are ever going to live again. There will always be some area of trouble. A problem to fix.

I get it.

I so get it.

My question which I believe to be reasonable is this: Why can't she lie in a bed in our home and I draw labs twice a day and fax the results to them and they tweak this and that and I receive the "tweaks" from our home health care company and then hook them up to the tubing, program the pumps, and infuse them into the body of my 5 year old daughter. Why?

Because its not the way they do things?

Guess what?

I don't care.

Its time to give her some type of quality and that will never be found inside the walls of this hospital or any other hospital. Period. That is how I feel about it. Ashley NEEDS to be at home. If it be for 6 days, 6 weeks, 6 months or 6 years. Its what we desire for our daughter. She deserves it. She deserves to fall asleep in peace. She deserves to not have strangers hands touching her every hour of the day. She deserves to not be afraid. She deserves to be surrounded by her family and our friends. She deserves so much more than this life that she has been thrown into .

So... lets get out of the box and make it happen for her. Lets just get it done!

Granted, in order for this to happen she MUST have a central venous catheter placed somewhere inside of her body. The only place I believe we even stand a chance at getting it done is here with this facility who has been inside of her body countless times. They know her best. I get it. So once that line is established THEN lets figure out how to spend her days not in fear, but in hope. Lets allow her to live again. Even if there is a hospital bed lying underneath her tree in her play room with the sunlight filtering in on her face. Lets get it done! Ash needs to go home. Soon.

So the ultrasound of her abdomen was done. It concluded that there are pockets of fluid collecting in the abdomen area. These pockets must be drained. Tomorrow she goes to Interventional Radiology to have a needle inserted through the wall of her abdominal cavity and into these fluid pockets. At which time they will attempt to pull out the fluid and send it off for cultures to determine if it too has pseudomonas growing in it. Her line placement has been put off. No discussion of when it will be scheduled until the fluid abscess' are gone.

The results from the echo of her heart have yet to be returned. I was told that the transplant surgeon will be coming down to speak to me in a little while. Hmmm...wonder what she's got to say?

I don't know exactly why all of this is happening. I really don't. I do know that the same God who hangs the stars in the sky each night and keeps them from falling and the same God who tells the oceans waves where to stop each tide is the ONE who has defeated death and can easily put the return home in motion for us. That I do know. He hasn't changed. He is still her creator and He still has the ability to pull her through. As bad as this all hurts none of that has changed.